Conference, NPR series explore end-of-life themes
Some 200 experts and leaders of the emerging end-of-life industry gathered at Gallaudet University in Washington, DC, in October for the 1997 National Leadership Conference, Last Acts: Leverage Points. Last Acts is a national coalition of over 70 health-related organizations, created by the Robert Wood Johnson Foundation of Princeton, NJ, in the wake of 1995’s SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment). SUPPORT, also funded by the Johnson Foundation, captured the nation’s attention with its irrefutable documentation of inadequacies in end-of-life care.
In the 11¼2 years since Last Acts’ organizing conference was held in Arlington, VA, 11 Last Acts task forces and resource committees have been pursuing a number of fronts, including financing, provider education, the definition of palliative care, diversity issues, standards, guidelines and outcomes. Foundation executive vice president Lewis G. Sandy, MD, announced at the Gallaudet conference that the foundation will continue to fund Last Acts activities, as well as launching a new initiative to fund regional and state end-of-life coalitions.
The Last Acts conference was designed to explore leverage points in the culture where pressure might produce positive results. Panel discussions provided brief glimpses from a variety of leading projects now underway across the country. The importance of cultural issues, whether medical culture, public attitudes, linguistic patterns or cultural differences, was highlighted, while several journalists now producing award-winning reportage on end-of-life themes discussed the mass media’s changing attitudes toward these issues.
Ira Byock, MD, founder of the Missoula, MT, Demonstration Project and project director of the Johnson Foundation’s new initiative, Promoting Excellence in End of Life Care, gave Last Acts’ keynote address on dying well in America. While "It is now inescapable that too many Americans die badly," Byock said, "in many ways, we can all sense that a new day is dawning, a new commitment to look at the hard facts and find ways to improve the situation."
But before these problems can be solved, "we must ask a basic question: What would success look like?" The answer, Byock believes, lies in the stories of individuals who have had positive dying experiences, and in the variety of new grass roots efforts springing up across the country to remedy the shortcomings in end of life care. Keys to leveraging change, he said, include standards built on best practice in hospice, measurement based on those standards, enforcement through accreditation and certification, and raised public and policy expectations.
"In conclusion, I think we are on exactly the right track," Byock said. "We simply need to continue to do what we are doing within the various programs and demonstration projects that bring us here today in our administrative duties and our planning and policy development, but also in the clinical work of our daily roles and responsibilities. In doing what we do, we can hold a vision of dying as once again becoming an integral part of the life of the individual and family, and of care for the dying as a rich and rewarding part of the life of our communities."
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In November, National Public Radio (NPR) introduced an extensive, year-long series examining issues related to dying. The End of Life: Exploring Death in America, was launched the week of Nov. 3 with five 30-minute reports on the afternoon news show, All Things Considered. These reports included a round-table discussion on end-of-life issues such as hospice, palliative medicine, and advance directives, featuring nationally prominent physicians Eric Cassell, MD, and Christine Cassel, MD, and Jeanne Brenneis, MDiv, STM, director of the Center of Bioethics at Hospice of Northern Virginia, Falls Church, and consulting editor of Hospice Management Advisor.
Other broadcasts that same week profiled a terminally ill patient of Hospice of Northern Virginia and Byock’s Missoula Demonstration Project. Among the 20 additional reports planned for this series on NPR’s various news programs are examinations of rites of death, the American ideal of the "good death," suicide, and how medical professionals learn to put death at arm’s length.
In conjunction with these broadcasts, NPR has launched an extensive, frequently updated Web site. It includes transcripts of the broadcasts, national health care resources, a bibliography and glossary, poems, essays, and other dying-related readings from novels, plays, and religious texts. There is even an opportunity for Web-site visitors to record a story of how a loved one died, which can then be shared with subsequent visitors. The broadcasts and Web page should provide a wonderful, high-profile opportunity for keeping end-of-life issues before the public.
Dying has been described as the great social taboo, Sean Collins, senior producer for "All Things Considered," tells HMA. But he believes it’s not so much a reluctance to talk about the issues as "a need to be given invitation. Once you do that, people have amazing stories to tell. That equates to useful radio but also to very good radio," he explains. "There was some discussion of whether people would turn this series off. All the anecdotal evidence we have says that did not happen." NPR producers spent nine months researching the issues, and "our overriding sense was that this was material people are hungry to know more about. It became abundantly clear that people would be interested in it."
The genesis for the series grew out of "personal experiences some of us have gone through, caring for family members. A producer here who died a couple of years ago, after a battle with HIV, brought it all home to us," Collins says, adding that his mother died six years ago, giving him a personal introduction to hospice. "I realized I was learning things at the bedside I never knew before, and I came from a medical family."
Collins says he hopes the series provides an accurate but sympathetic portrayal of hospice care, complications and all, "without sugar-coating it or heroicizing it." The industry faces a huge hurdle in trying to change the medical culture, he adds. "I think hospice has done a very bad job of presenting itself to the public. The fact that Jack Kevorkian was allowed to gain and maintain center stage on this issue speaks to the need for better hospice leadership at the national level."
For more information, contact NPR’s end-of-life Web page: http://www.npr.org/programs/death. Or contact the Robert Wood Johnson Foundation’s Last Acts Web page: http://www.lastacts.org.
The ABC-TV network comedy series Home Improvement on Nov. 18 highlighted a hospice residence said to be modeled on the Hospice Home of Hospice of Michigan in Southfield. Set in Detroit, the episode portrayed 15-year-old character Randy Taylor, son of series star Tim Taylor (comedian Tim Allen), volunteering at the hospice residence with an elderly woman with cancer. The program gives a positive treatment to hospice, sandwiched between jokes, bantering and the appearance of another hospice volunteer dressed as a clown. But when the patient takes a sudden turn for the worse, Randy is forced to confront his feelings about her impending death and issues of spirituality.
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A new series of education audiotapes, Clergy to Clergy, Helping You Minister to Those Confronting Illness, Death and Grief, has been released by the Hospice Foundation of America (HFA), based in Miami. Featuring bereavement experts Rev. Kenneth Doka, Rabbi Earl Grollman, Rev. Paul Irion, Dr. Therese A. Rando and Rev. Anita Bradshaw, the six-cassette series is designed as a nondenominational resource any religious advisor could use in ministering to families suffering from grief or loss.
HFA has also announced plans for its fifth National Bereavement Teleconference, Wednesday, April 2, 1998, from 1:30 to 4 p.m., EDT. This year’s theme is Living with Grief: Who We Are, How We Grieve, focusing on how culture, spirituality, age, and gender shape the grieving process. Downlink sites need to register in advance for this teleconference, but registered sites receive educational materials, a site coordinator’s manual, media kit, satellite, and technical information, and an opportunity to provide inexpensive continuing education credits. For information on either of these resources, call the Foundation’s Washington, DC, office at (202) 638-5419, or visit its Web site: www.hospicefoundation.org.
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The Daughters of Charity National Health System and Carondelet Health System in November hosted a live satellite teleconference on care of the dying issues, aimed at educating health professionals within the two systems on how to improve care provided to persons with life-threatening illnesses. The program included a presentation on focus group research conducted by Supportive Care of the Dying: A Coalition for Compassionate Care, a group representing the two health systems and three others, as well as the Catholic Health Association. The coalition is now developing a new model of community-based care for the dying (see HMA, October 1997, p. 118).
In November, Sens. Jay Rockefeller (D-WV) and Susan Collins (R-ME) introduced new legislation designed to give individuals better information about completing living wills and other advance directives, more access to experts in end-of-life decision-making, and more personal control over these issues. The Advance Planning and Compassionate Care Act of 1997, also introduced in the House by Rep. Sandy Levin (D-MI), aims to increase the number of advance directives used to help people spell out the kind of medical care they would want or not want at the end of their lives if they were too sick to speak for themselves.
It thus refines and repairs some of the problems in the 1990 Patient Self-Determination Act, which requires health facilities receiving federal funds to inform patients of their right to prepare advance directives. The new legislation would:
• assure that an advance directive valid in one state would also be valid in other states;
• encourage Medicare beneficiaries to discuss end-of-life issues with a trained professional;
• expand Medicare drug coverage to include non-intravenous medications to relief chronic pain in patients with life-threatening illnesses;
• require executed advance directives to be displayed prominently in patients’ medical charts;
• create a national telephone hot line to provide information about where and how to get good end-of-life care.
It also directs the Secretary of Health and Human Services to gather data on an approach to further improve end-of-life decision-making for Medicare beneficiaries. A briefing to educate members of Congress on end-of-life issues including this bill cosponsored by New York-based Choice in Dying and the Hospice Foundation of America, was scheduled for December 10 in Washington, DC.
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The Oakbrook Terrace, IL-based Joint Commission on Accreditation of Healthcare Organizations (JCAHO) recently announced that its newsletter, Resources, is now available on the World Wide Web, at: http://www.jcaho.org. This biweekly publication includes brief abstracts from more than 175 health care journals, magazines, and newsletters, covering a broad range of health care fields. For information, contact Jan Aleccia: [email protected]. Telephone: (630) 792-5474.
JCAHO has also published a new book, Home Care and Hospice Staff Competence: Examples of Compliance, intended to help home care and hospice organizations ensure the competence of their staff which is often the greatest determinant of their quality of care.
The book provides background information on the importance of staff competency in JCAHO standards, survey activities in which organizations are expected to demonstrate compliance with the competency standard, and real world examples of organizations that have demonstrated compliance with the standards. To order this book (cost: $40), contact JCAHO’s Customer Service Center at (630) 792-5800, using order code HC-900EM.
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Florida Governor Lawton Chiles encouraged the state’s families to use their Thanksgiving and Christmas holiday gatherings to talk about "final plans instead of football," at a November 19 forum sponsored by the Florida Commission on Aging with Dignity. Gov. and Mrs. Chiles planned to review their own living wills with their children at Christmas. "These are things that need to come up around the dinner table instead of the operating table," said H. James Towey, president of the Commission, which has received national attention for its innovative, non-legalistic approach to advanced directives, called "Five Wishes."
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